I haven’t posted for a while as things have been a bit hectic here and Neil’s deterioration has been relentless. It feels like a domino effect. No speech, no swallow, PEG fed bolus feeds/meds, no function in left arm, now limited use of right arm/hand and to top it off, he has completely gone “off his legs”.
In April, after many falls, I asked the OT about a full body hoist but after her “assessment”, he did not fulfil the criteria, because obviously, you have to be in a crisis, before getting equipment! Which is exactly what happened 2 weeks later, when he was unable to weight bear. I was told it would take 48hours to get a hoist but because of the weekend it would be 4 days! When I asked “how do we cope meantime?”. “Keep him in bed and pad him up”! Needless, to say I ripped her head off. I felt so angry, especially as I had tried to be forward thinking and a step ahead of this disease. Where is the dignity and compassion? Is this actually caring for the dying in the community? I have since had a virtual meeting with the senior OT to ensure systems are put in place and tried to explain the unpredictability of MND, so hopefully, in the future no one has to go through what we have had to go through.
Anyway, got an emergency hoist within 3 hours, emergency carers twice a day, with me doing it in between. So much for the 5 page risk assessment which says 2 people to operate! Carers now coming 3 times a day and awaiting package of care.
The last 6 weeks have been so stressful and we now have lightweight wheelchair, power chair, freeway commode/shower chair, gerebit toilet (although the chair didn’t sit properly over the toilet, so had to get a joiner to cut into the pipe box!), and had to use ordinary commode, emergency hoist, OT department hoist, quotes for ceiling track hoists, physio for left arm and now has orthopaedic sling, district nurse, wheelchair people, GP, MND specialist nurse, key worker, dietician to change feed, eye gaze appointments. All whilst my kids were sitting their final school exams!
And to top it off, Cognitive test shows signs of FTD. As if MND isn’t enough, lets just throw a bit of dementia into the mix!
As a nurse, I knew this was going to be a tough journey but had not quite appreciated how much. Apologies for the long post.
In April, after many falls, I asked the OT about a full body hoist but after her “assessment”, he did not fulfil the criteria, because obviously, you have to be in a crisis, before getting equipment! Which is exactly what happened 2 weeks later, when he was unable to weight bear. I was told it would take 48hours to get a hoist but because of the weekend it would be 4 days! When I asked “how do we cope meantime?”. “Keep him in bed and pad him up”! Needless, to say I ripped her head off. I felt so angry, especially as I had tried to be forward thinking and a step ahead of this disease. Where is the dignity and compassion? Is this actually caring for the dying in the community? I have since had a virtual meeting with the senior OT to ensure systems are put in place and tried to explain the unpredictability of MND, so hopefully, in the future no one has to go through what we have had to go through.
Anyway, got an emergency hoist within 3 hours, emergency carers twice a day, with me doing it in between. So much for the 5 page risk assessment which says 2 people to operate! Carers now coming 3 times a day and awaiting package of care.
The last 6 weeks have been so stressful and we now have lightweight wheelchair, power chair, freeway commode/shower chair, gerebit toilet (although the chair didn’t sit properly over the toilet, so had to get a joiner to cut into the pipe box!), and had to use ordinary commode, emergency hoist, OT department hoist, quotes for ceiling track hoists, physio for left arm and now has orthopaedic sling, district nurse, wheelchair people, GP, MND specialist nurse, key worker, dietician to change feed, eye gaze appointments. All whilst my kids were sitting their final school exams!
And to top it off, Cognitive test shows signs of FTD. As if MND isn’t enough, lets just throw a bit of dementia into the mix!
As a nurse, I knew this was going to be a tough journey but had not quite appreciated how much. Apologies for the long post.
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